Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-04-2009, 01:52 PM #1
SandyRI SandyRI is offline
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Default One year anniversity of diagnosis

Hi everyone

I was writing a summary of my symptoms from my pain journal and noticed that the one year anniversary of my diagnosis with "suspected" RSD is coming up - June 23rd. It's been over 31 months since I hurt myself carrying a workbag loaded with too many workpapers and tore my rotator cuff (the woman I was working with that day was pregnant and I didn't want her to have to carry anything). Some things you never forget.

I've had 2 surgeries, approx 25 trigger point injections in my upper shoulder, neck and the back of my head that caused my RSD to spread, 7 SGB, over 150 units of PT, and probably 15 different meds. I initially lost 30 pounds, but have since gained about 10 back (the Topamax has cost me about 5 pounds, and so has Methadone!!).

I've been to 2 different RI PM docs (neither one of them very good), a great Boston doc from a small hospital with limited resources who referred me for ketamine at the Beth Israel, and just recently, the Beth Israel hospital in Boston with a downright nasty doc where I was told that I wasn't ready for their ketamine program. (The next day Kathy Provizanno, a manager of some sort at the Arnold Pain Clinic, told me they had decided to close the ketamine progam to new patients - is that really the truth?? I doubt it.) The problem is I still look too good, work FT, and can walk, even though the ankle and bottom of my right leg gets very swollen some days and hurts horribly. The doc I saw actually accused me of having a sprained ankle and varicose veins (I sprained it in Sept of 2000, the veins are from carrying a 9 lb baby boy in 1994).

Talk about battles. Those of us with RSD have had to develop the nerve and tenacity to fight for just about everything we need to maintain even a smidgeon of a normal life. And a lot of the time we don't even KNOW what we need. We often start out having no clue what is wrong, just hurting badly and knowing that something is definitely not right, and then (unless we're REALLY lucky) we end up in the office of a small town doc who has no clue either. By the time we get to where we need to be we've been messed up somehow - inappropriate procedures, surgeries, time wasted, etc.

In the end, we survive by getting as educated as we possibly can and from the support of others. I have learned a lot from you guys. And I have support from my family and friends. I walk a LOT. My PT has kept my arm at almost full ROM and has helped me solve a lot of problems. I also have the parents of a child with RSD that are always there when I reach out to them. But I am far from well, and I am so sad that a whole year has gone by and I'm sicker than I was then. It's just not fair.

Amazingly enough, the Beth Israel doc I saw wants to INCREASE my Topamax and add a strong muscle relaxer - Skelactin (sp?) to what I already take. YUK! She also suggested much more intensive PT, not considering what the corresponding increases in pain would do to my FT work schedule or my participation in the household. Having harshly criticized my current meds and PT, she went on about other stuff, including the absence of testing that had been performed by my RI docs on my autoimmune system, after telling me she had trained both of them (!!). BTW, they are all the same nationality - from India. All of her criticism was aimed at my husband and me, as if it were OUR fault that the docs in RI are so screwed up. She also commented on another patient she had seen from our poor dumb state earlier in the day - apparently their doctor referred them to Boston with the promise of ketamine also - just WHAT are WE THINKING?! It's for HER to have, not us sick people....

I wrote a letter, and requested another doc for my future visits (if any, I have to think about it). I also spoke to the manager. But I still feel rotten about how I was treated.

So - I am having a pity party this week. I try to keep in mind that things could be worse, but this still really stinks. I did see one pyschologist about a month ago, but the time committment is a problem right now and frankly, she wasn't that smart. So you guys are my shrink this week (hope you don't mind....) And sorry this is so long.

XOXOXO Sandy

Last edited by SandyRI; 06-04-2009 at 02:41 PM.
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Old 06-04-2009, 02:10 PM #2
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Sandy,

Wish I knew what to say to make you feel better. I totally understand where you are coming from. It is so difficult dealing with the docs & trying to maintain a somewhat normal life (as much as we can). We just have to keep trying to find the ones that can help us and be assertive (I never was with doc before). I lost count of how many I have seen in the past 6 years. I remember my RSD anniversary. I feel like it is a milestone every year.
Hopefully, you can get more help soon & I hope today gets better for you.
Linmarie
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Old 06-04-2009, 02:36 PM #3
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Heart Sandy

No need to apologize for anything, my friend. Another year has gone by, and you are still working even though you have difficulties. That is a positive accomplishment in itself. You are a strong woman, as you have proven it by being as active as you are, no matter how painful.

Some of the doctors that we come into contact with are a thorn in our side; be it ignorance,arrogance, or just plain incompetence.

Then there are doctors that take the time to truly LISTEN and actually SEE their Patient. Not as many as we need and want as RSD patients;however, it is better than none at all.

I am happy that you are my friend,Sandy. You are strength and kindness all wrapped up in a sweet roll.

You are not alone, and most of all..you are loved and supported
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 06-04-2009, 02:42 PM #4
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Hey Sandy,

I'm sure it's not an anniversary that you will celebrate. It's O.K. to have a pitty party you now how awful the pain is. The pain journal is a nice release.

Doctors what to say. Some are really really good and some are really really bad. I wish you the best of luck in finding the ones that are right for you.

I think it's great you are still working. Take care of yourself!!!!
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Old 06-04-2009, 04:39 PM #5
AintSoBad AintSoBad is offline
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Sandy,
I feel your pain.
I really don't know what to add, that hasn't been said.
(I've been operating on a cluster migraine (whatever it's called) for the past week.)
I don't have my thoughts together well right now, sorry.

Other than this,
You WILL (By nature of yourself, your tenacity) Find the Good Doctors that you need!
(A good doctor, I've found, can tell an awful lot, just by looking at you, or us), Our expressions, our posture, what part(s) of our bodies we "favor", what we say can be secondary to them, "The Good Doctors".

The only thing I'd say, is at this date (anniversary), you should focus your efforts on just that! Finding "The Good Doctors", who will take you into your future!

Love and hope to you,

Pete
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Old 06-05-2009, 07:38 AM #6
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Originally Posted by AintSoBad View Post
Sandy,
I feel your pain.
I really don't know what to add, that hasn't been said.
(I've been operating on a cluster migraine (whatever it's called) for the past week.)
I don't have my thoughts together well right now, sorry.

Other than this,
You WILL (By nature of yourself, your tenacity) Find the Good Doctors that you need!
(A good doctor, I've found, can tell an awful lot, just by looking at you, or us), Our expressions, our posture, what part(s) of our bodies we "favor", what we say can be secondary to them, "The Good Doctors".

The only thing I'd say, is at this date (anniversary), you should focus your efforts on just that! Finding "The Good Doctors", who will take you into your future!

Love and hope to you,

Pete

So sorry about your head, Pete. I can tolerate pain in my neck, shoulder and legs much better than my head - that kind of pain is the kind that can make me really start to loose it. Do you have a good therapist? Mine tries to loosen my neck muscles and I think it helps. Heat around my neck helps too.

I hope you start to feel better soon. Take care. And thanks for your reply.

XOXOXO Sandy
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Old 06-05-2009, 08:01 AM #7
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Hi SandyRI

You are not alone. I've noticed a lot of caring people on here. I do not post to much but I do read the threads often. I also just passed the 1 year formal dx of having crps/rsd. It's no fun and hard to deal with. I don't know how the people around me can stand me when I can not even stand myself half the time.
I too have seen psychologists but in reality I can not afford to go anymore. So I like you come here and read other posts or occasionally make a post.
I am going in for scs trial soon. I pray it works I don't know what other options are out there. I know some like it others hate it. Time will tell for me. I've been on different meds over this past year and not many work for me.
Hang in there, you're not alone, even though many times it may feel that way.
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Old 06-05-2009, 08:37 AM #8
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Hey Sandy,

So sorry to hear that you are feeling down at the moment!

I can totally relate to how bad the Anniversaries of RSD are and am sure that many others can also! I had my 2 year anniversary of RSD on the 20th March and found it really hard to cope with and felt pretty sat and depressed that things hadn't improved in 2 years, but I survived!

Please allow yourself time to grieve. RSD is like losing someone that you love as you have lost some of your old life. You need to allow yourself to let all of your negative emotions out and then try and pick yourself up and focus on the good things (the fact that you can work etc).

I allow myself to have pity parties every now and again and find that they help, as long as I dont stay in them for too long. It helps to let your feelings out and it doesn't make you weak at all! No one can expect you to be strong all the time with RSD!

I really admire the fact that you're still able to work with RSD! I go to school 4 hours a day, 4 days a week and that is stressful enough so I can't imagine how hard it can be working full time at times! You're amazing!

Take care of yourself and please know that we are all here for you and always will be!

You're in my thoughts.
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Old 06-05-2009, 09:07 AM #9
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Originally Posted by ali12 View Post
Hey Sandy,

So sorry to hear that you are feeling down at the moment!

I can totally relate to how bad the Anniversaries of RSD are and am sure that many others can also! I had my 2 year anniversary of RSD on the 20th March and found it really hard to cope with and felt pretty sat and depressed that things hadn't improved in 2 years, but I survived!


I really admire the fact that you're still able to work with RSD! I go to school 4 hours a day, 4 days a week and that is stressful enough so I can't imagine how hard it can be working full time at times! You're amazing!

Take care of yourself and please know that we are all here for you and always will be!

You're in my thoughts.


Dear Ali:

YOU humble me with YOUR strength and determination to achieve your degree while battling RSD so badly in all your limbs at only 14 years old. You are spending a significant part of your day in intensive PT. And you do it all without meds most of the time. WOW!! (I cringe at the thought of intensive PT or someone touching me in my affected shoulder - I am seriously whacked in the head when it comes to that stuff!). You are very special, and I sincerely hope that you are happier in your new school. Dive into your studies, enjoy the good weather (when it comes to the UK), and develop relationships with good people who like you for YOU, and before you know it you will be working also.

Thanks so much for your reply, XOXOX Sandy
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Old 06-05-2009, 09:52 AM #10
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Quote:
Originally Posted by SandyRI View Post
Dear Ali:

YOU humble me with YOUR strength and determination to achieve your degree while battling RSD so badly in all your limbs at only 14 years old. You are spending a significant part of your day in intensive PT. And you do it all without meds most of the time. WOW!! (I cringe at the thought of intensive PT or someone touching me in my affected shoulder - I am seriously whacked in the head when it comes to that stuff!). You are very special, and I sincerely hope that you are happier in your new school. Dive into your studies, enjoy the good weather (when it comes to the UK), and develop relationships with good people who like you for YOU, and before you know it you will be working also.

Thanks so much for your reply, XOXOX Sandy
Sandy, your words really touched me and bought tears to my eyes! Thank you SO much for your kind words ... they mean a lot!!!

It IS very hard at times trying to stay positive at times with RSD but I guess I have figured that I am probably going to have this thing for life unless someone finds a cure or some magic treatment comes out that will help so can't let it ruin my life too much.

RSD has affected my life sooo much and I have missed lots of my childhood and don't want to lose any more. There are lots of things that I cant do because of my RSD but I try and do what I can when I feel up to it.

I think RSD was one of the reasons why I want to be a Psychologist. I have learnt a lot since developing RSD and want to try and help others in a similar situation if I can. I'm lucky to have my mum looking out for me and helping me get into College from September to try and reach my goals.

I'm not undergoing intense PT at the moment but it is something that we are looking into. My PTs want to try and book me in for at least a week intense PT in a few weeks to try and help with the RSD and Dystonia. I'm hoping that it will help. None of the pain medications helped me and made me worse so I think that is what makes it 'easier' for me to undergo PT without meds because none worked. Ketamine helps a little but my body has built up a tolerence to it so it doesn't work as much as it used to.

Thanks so much again for your kind words!! Stay strong and take good care of yourself!
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